One woman's quest for better health… living with lymphoedema

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The unwelcome guest Part two..

In Part Two Loretta tells of her time in Hospital for a Lymph Node Transfer. It did not all run smoothly but she is home and healing well now.

The unwelcome guest Part two

“In 2013 my cancer surgeon encouraged me to speak to a Plastic surgeon that was operating on people with lymphedema. I went for a consult and he said he would take lymph nodes from my neck and put them in to my ankle. I asked him how do I know I won’t get lymphedema in my neck and he said there was a chance!!! I was not happy with this answer and never went back!!! Then in June my surgeon told me about a Dr. at Sloane Kettering who was doing something new with lymphedema patients. I went to see Dr Dayan in July, he told me about the testing he did called Reverse lymph Node Mapping using lymphoscintigraphy. This new test could prevent possible Lymphedema at the donor site, by choosing nodes in areas where they are plentiful. It is also used to check where nodes need to be transferred, to improve the lymphatics. Dr. Dayan is probably the nicest individual I have ever met, he takes the time to speak with you and your family and answer all your questions. I actually went to see him twice before I made my decision. I also asked to speak to a patient that he operated on to see what they had to say. I finally I had the surgery on January 26th 2016 so I am just now recovering.

On the morning of the surgery I had lymphoscintigraphy done on my arms to choose the best nodes to use for the donor site. Dr. Dayan decided to take lymph nodes located under my right arm which were draining into my trunk. I just want to add the lymphoscintigraphy is not something to be afraid of as I had it done three times, twice in my hands and another in my hands and feet. I opted for the lidocaine injections first and all you feel is a pinch then the dye is injected and you do not feel it.

After the surgery Dr Dayan was happy with how it had gone but he told me in order to get the donor nodes they had to cut a nerve and then he sewed it together.The day after surgery the PT tried to get me out of bed but my BP dropped 50 points and I felt so sick. So they asked me to sit on the side of the bed while they remade it. Then the PN emptied my drains. She pulled on the tubing, as they all did, but very close to the donor site, instantly I was in agonising pain. My medical team was there and they tried various pain medications, thank goodness after about two hours the pain subsided. My doctor came and started me on a different medication, for nerve pain, that kept the pain controlled. He did say it could take a couple of months before it totally settled. I also got an infection at the site of the transferred nodes in my calf, so I had to start IV antibiotics. This was a worry incase this damaged the donated nodes. It took a few days to be able to get out of bed due to my blood pressure dropping but gradually I was able to manage. Those first days I felt disappointed in my self for not managing better but I forgot that this is major surgery and it effects everyone differently. I did not want to go home till I could walk and manage ok.

When I had my ovarian cancer surgery I got out of recovery at 2 am the surgeon asked my husband did he think I wanted to go home? How crazy is that they sent me home 10am that morning and later that day I was back in the ER. So this time I was in no hurry to go home.
In the US the insurance companies want you out right away, that is why I was surprised they were even paying for my surgery. Before I could go home the nurse taught me How to give myself an injection of a blood thinner, I think it is lavolax but not sure as was too nervous following instructions to see the name!!! I had to give myself injections for 30 days post surgery!!

As I started to feel better I sat on the edge of the bed good leg dangling lymph leg tucked on bed to get acclimatised to getting up. The nurse and my husband got me to stand up and then sit in a chair. I still got nauseous so they gave me Zofran to take away the nausea. About 20 minutes later the PT came and I got up and I walked/hopped about 10 feet to the hall, sat for a few minutes then walked/hopped back to my chair where I sat for 4 1/2 hours. I felt proud, it felt so good to be out of bed. My doctor came and told me I would not be going home till after the weekend but the next day they will take out the foley catheter I was happy about this but a little scared that I would have to get up and leave myself enough time to get to bathroom…… Hopefully sharing my progress report will help others.

Eventually I got home and felt so happy to be there, I love it. I still had both drains and they would be taken out on Wednesday 2/10. I had the option of going into the Dr earlier to take out leg drain but arm drain was still producing too much? It was not worth it for me to go into NYC for one drain. I live in NJ about a 45 minute ride but I could not get to the car as my garage is down fifteen stairs and four front steps. When I came home from the hospital my husband parked in the driveway and our local rescue squad sent 2 EMT’s . They put me in a chair and carried me up and into my bedroom. So if I went into the city for one drain I would have to get the rescue squad to come twice, so it was best to wait and get two done together.

I am now walking on my leg but I am not 100% yet, still some pain and a lot of stiffness in the calf which is the site of the transferred nodes. I stopped bandaging because too much compression is not my friend it actually causes more swelling. My foot was so swollen but since I stopped bandaging it has gone back to normal. I still wear toe caps on it and have started to wear my ready wrap again with some cotton padding over the transplant site. This has only been for 2 days, I checked with doctor and therapist first and showed the difference in my foot and the improvement since I stopped bandaging. I also stopped with any compression at night. I kept waking up in pain because my foot and ankle was hurting so much and would have to take off whatever I was using for compression, I even tried my Tribute and that was too much as well. So now I happily sleep without anything but elevated my legs ( I have a bed that raises the foot and head) and have seen the swelling in my calf getting better as well as my thigh. My doctor tells me to be patient it could take up to a year or more to see any results. So time will tell, hopefully when I am at my optimum size I will be fitted with a custom stocking:)

I am happy for anyone to ask me questions and I have told Helen to share my email with people. Just send your questions as a comment and I will answer.” Loretta

Thanks once again Loretta for sharing your progress. We can never forget that this is major surgery and sometimes things do not run smoothly as Loretta found. However all those problems are now resolved and it is time to heal and have much patience…

Any information included in this blog does not replace the advice of your Lymphedema Doctor or therapist…. Helen

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.https://lymphnodetransplant.wordpress.com/ Thanks

hello Loretta … I read your story I am an Italian girl is living with lymphedema in his right leg for six years after the removal of lymph nodes in the groin destro.e ‘a bit’ of time that I am considering surgery surgical self transplant but the questions and doubts are always tanti.per this take this opportunity to ask you some questions: how many days were you remained in the hospital ?? surgical and post ‘very painful ?? how long did you manage to get back to your normal life with the leg at least as before surgery ?? I am a bit ‘scared by everything I hope you can help me thanks A.B.

Hi sorry I didn’t respond to you but I haven’t checked the site in a while. My leg has improved quite a bit. I get measured every other month a each time it has shown my leg is reducing and has actually looks almost the same as my normal leg only a slight difference. Be happy to speak to you my email is lora5319@verizon.net

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Lymphoedema Awareness

I am writing this blog to keep a record of my Lymph Node Transplant in the hope of inspiring and helping others.
I wish to bring awareness to the issues of Lymphoedema so that people will better understand this very difficult and little understood health problem. We need more research and a brighter outlook for those with both Secondary and Primary Lymphoedema.
Items in this blog are to only be used in conjunction with a medical diagnosis and with a treatment plan specific to your needs. Please check with your lymphoedems specialist if you are feeling unwell or unsure about treatment and care.. MLD should never be used if you have an infection..Please share this blog with your friends and family... Thanks

Feel free to share with others.. it can be distributed via social media, reblogged or added to websites.. please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog
https://lymphnodetransplant.wordpress.com/ Thanks